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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules


I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

I cant believe I am here. I so dont want to be.

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I cant believe I am here. I so dont want to be.

Post  patty on Mon Nov 16, 2015 2:03 am

I am brand new. I am beside myself that vulvodynia is most likely my diagnosis. I want to tell my story, simply because I feel so incredibly alone and depressed. I have struggled with depression in my life...for the bulk of my life, and had begun to feel a real sense of hope until this.

When I was a child I was sexually abused by a sibling. It falls under sexual abuse, and should not be minimized, but thank God I was not physically injured. Emotionally however, I truly suffered.

I married a difficult man who did not treat me well. In addition, he had little to no interest in sex. Due to my history, he was my first sexual partner. We did have two children, but I always felt unloved and his desire was very low.

I started having vaginal pain when the children were very small for the first time. Doctor after Doctor...finally a specialist..answer: Vulvodynia. It was so long ago, I do not even recall the treatment. I believe I suffered for approximately 3 months.

Years went by. Occasional yeast infections, and at times, that old burn and itch would return, but Doc could find nothing. I did not want to even think about the possibility of Vulvodynia...I just remembered "no cure and chronic." Sounded like a death sentence to me.

I should mention, simply because I am feeling sorry for myself, that during the course of my marriage, I began drinking at night and graduated to pain pills. Alcoholic and addict....awesome. My two beautiful children deserved better. I had my last drink and drug and left our home to get help in 2006. I have been clean and sober since. And my ex and I shared custody. Both children are graduated college and one is pursuing his Phd. I am very proud, and I guess I didn't totally mess them up.

Two years ago, I went back to school and in one month I will graduate with a masters in Mental Health Counseling.

In the past 5 years (it took me 4 years to even consider dating...my husbands lack of interest and my inexperience had crippled my self-esteem)...I have had 3 boyfriends...first two lasted a year each, and one of them is still a good friend. I currently have a bf that I have been seeing for 7 months. (I liked my independence and have felt recently that I don't know if I ever want to remarry. I'm OK with that, which is huge for a person who used to feel utterly dependent on a man). I have found with these experiences, that I really enjoy sex...turns out it is a really fun aspect of life!!

The last nine years have been extremely extremely trying. Financially I could barely make ends meet and always had to work two jobs. I loved returning to school, but full time work, internship and classes made for 12, 13 and 14 hour days. I was still so proud of myself for turning my life around.

Two months ago, the pain, burn and itch returned. Same old thing, no yeast, no bacteria. I am so freaking miserable. My OB said vulvodynia, told me I could never wear pants again...or tights or nylons...excuse me but WTF?! She told me to go home and throw them all out. Literally. Worse...she said it with this sort of weird smile on her face. I suppose this is just her trying to be...idk...something...but honestly, I was in shock. I live in New England. Winters are very cold. Exactly what SHOULD I wear? On top of that, I finally like my body. I have worked very hard on that after the abuse, and years of being rejected by my ex-husband. I have a good figure and until the last two months exercised regularly. It is out of the question now. Sex is also out of the question. I am so miserable, I cried all the way home from school...sobbing along the highway feeling like an idiot.

I am finally going to be in a position to have a real job and not have to worry every second of every day about money. I just found out I am one of two people graduating in 2015 to be invited into the National Honor Society and am graduating with a 4.0. Here is my beef: I have overcome a lot. It is no ones "fault" but my own that I became an addict and alcoholic, but I have fought like hell to regain my dignity. I didn't choose to be abused as a child, it happened, it sucked, and with a lot of help I have come out the other end relatively whole. NOW THIS. As much as I know about the horrors of suicide ...what it does to your loved ones....I feel like I cannot live with a never ending debilitating pain that prevents me from living my life, and having a relationship that includes healthy sex. I will give this doc a chance, but I am lying here with burning pain, in hideous baggy sweats, feeling that I just don't have the energy to pick myself up and dust myself off again. This has gone away in the past, but what if it never does? I just don't think I am strong enough to face that.

I am calling to get an appointment with a specialist tomorrow. There are only two in the state who specialize in vulvar issues. The one I am planning or hoping to see has a background in dermatology, but I was recommended to her by two people that seemed to know what they are talking about (a very kind gynecologist, and a sex therapist with a medical background who visited my school today...I know...how weird is that that I cornered her..but I am DESPERATE). I almost had to leave class due to the pain and itch...today I wore jeans...for the first time in a month...they were loose...but it was really bad. It is so so depressing.

I have no insurance right now. I don't care, I will spend whatever to get a specialist to advise. I googled her, and the reviews....well...encouraging in that she seems to definitely know her stuff, and appears to have helped people with vulvar issues...but just about everyone said she was "abrupt" and those were the nice ones!! Others used more choice words. I guess I will just suck it up, but the way Im feeling, I don't feel like taking any crap from anyone.

I thought my life was going to get better. I thought I was doing all the tough stuff I had to do to make that happen. This is horrible, and I feel as though I have little will to live.

I keep reading about primrose oil. I guess you just buy those tablets at the drug store? I have so much to do to finish up my graduate studies, and I dread getting out of bed in the morning. I sleep reasonably well, but as soon as I wake and start moving around, the pain and burn continues.

I know others have it worse....I just feel too weary to fight a battle that sounds...from all I have read...unwinnable.

Thank you for listening.



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Re: I cant believe I am here. I so dont want to be.

Post  sgw11 on Mon Nov 16, 2015 11:37 am

Hey Patty,

firstly I just wanted to say how sorry I am that you had to go through that and how proud of you I am for being able to continuously pick yourself up again time after time. There is no way that I could ever understand or imagine what you went through, but I want you to know how much of an inspiration you are to women (and men) who have survived sexual abuse.

I have had vulvodynia for almost 2 and a half years now, and I would be lying if I said I didn't spend nights crying myself to sleep over it. But I want you to know that it is not a death sentence. Although there is technically no cure, this does not mean that you will not be able to find some form of relief. As I'm sure you've read, there are lots of different treatments available that work for different people. Unfortunately it is a case of trial and error, but I want you to know that there are lots of options. I have never had such luck with this, but I know that some people have found relief from changing to sensitive laundry detergent, body washes that contain minimal chemicals, unscented toilet paper etc. You can also try taking calcium citrate, which is based upon the theory that small crystals can form in the vaginal walls when you urinate from the types of food that you eat. I know this can help some people too.

I'm not sure about primrose oil though sorry, but I'm sure someone else on this thread will know! There are lots of creams and oral medications you and your doctor can go through which can help to reduce the discomfort or completely alleviate the pain. Like I said different treatments work for different people.

I also know the type of doctor you're talking about! I've seen quite a few specialists, and one of them was just trying to lighten the situation I suppose by joking about stuff and it just made me feel worse! I have never been much of a fan of jeans personally, but I do wear lots of leggings. For me personally they are much more comfortable and put less pressure on my vulva. So maybe you could try that? However I know that this is still not desirable. It sucks not being able to wear the things you want! Or having sex when you want to! I have always been in tune with my sexuality, and absolutely love having sex. So having that taken away from me has definitely been the hardest part for me personally. But I still have been able to have it. For me, initial penetration was the most painful, then once we got going it didn't hurt. I did feel tender sometimes after, and would grab an ice pack. I know it sounds like a bit of a mood killer, but you gotta do what you gotta do. Unfortunately I have developed secondary vaginismus (where your muscles spasm which causes a burning sensation when I try to have sex), but I have been seeing a physiotherapist to help with it.

There are lots of treatments to try. I was actually cured by amitriptyline cream for a while within the first couple of months of being diagnosed. Unfortunately it came back, but who knows, it might work for you! Facing this disorder sometimes is overwhelming, and sometimes reading stuff on the internet only makes you feel worse! Please feel free to personally message me on here if you prefer to keep stuff more private. I am always here for a chat, whenever you need. It's a shit thing to be diagnosed with, but you will be able to face it, you obviously have amazing inner strength. And if you have days when you feel like you can't, please post on here. Someone will be able to talk with you and empathise. If you don't mind me asking, what type of vulvodynia have you been diagnosed with?



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